The Voices
“…I don’t know if you‘ve noticed but the more we meet, the louder the voices get. The more confident the voices get. The more comfortable people get with sharing. And I just think at the outset we had a lot of people that were very quiet. They had to be asked to participate. And that’s not so much the case anymore. And I think that really says a lot about the research team and how welcoming the research team has been of the patient voice.”
“I came in with a set of expectations that have changed dramatically I think. I see our role differently than I did when I started. And it’s not, I see our role much more positively than I did when we started. And I see our role as having more meaning than I saw it at the outset. So, I think that’s really important. I also don’t think I would have ever been prepared to participate in the stuff I am now participating in had I not gone through this trial. Like I said at the outset, I’ve learned a lot. I’ve learned a ton here.”
“It’s been really rewarding and again you have been very intentional about keeping us part of the next steps of the project.”
“I thought about this quite a bit and I think in the participation, I’ve learned so much from the other PFAs. I think you’ve got a really good group. I think all of our participation is enhanced by everyone else on the team and I think the participation is enhanced by everyone else. I’ve enjoyed my participation a lot.”
“I love it, as you know. It is a fascinating subject. I think it is a very important subject. And I’ve always felt like my opinion is valued. And particularly over the last year, I’ve become more involved. I’ve been in the Cross-PBRN meetings, as well as the PFA meetings and RPP meetings. …It just feels like I am being useful, which is wonderful. I love being useful especially when it’s important.”
“It is equal stakeholders from the researchers to PFAs; everybody has the same voice. That doesn’t always happen in projects.”
“You have taught me and shepherded me along in this process so brilliantly and beautifully I can now apply similar structural things to other projects. It has been very interesting to me to bring to other conversations because everyone is so willing to listen even if things go off topic or are not feasible or whatever. But listening, not everyone does that. I feel better prepared because of this experience to go back into other projects.”
“I’ve never been part of a project that has ever been so intentional with finding out how the PFAs feel. And just doing the reflecting and things like that, that’s…that hasn’t happened as much as it does with this project.”
The quotes above are separate from the videos. Both are our PFA perspectives and reflections.